We are running our 4TH Blood Drive in Braeden's honour in Calgary on May 26th. We have decided to do a week later due to the long weekend and Michael's work schedule. For those of you looking to donate please contact myself (lialousier@gmail.com) or Lorna Zebedee (lorna.zebedee@gmail.com) as the spots have been already pre-booked and I can slot you in. The time of the drive will be from 9-9:30am and this will be the first one that I qualify to donate for. I am finally (?) 6mths post surgery!!! Any extra support would be GREAT! We are hoping to fill all 15 spots that we have reserved and I am also hoping for continued press coverage of our event(s). Braeden did require further transfusions with his (just) past major surgeries and it is our continued goal to give back what we take
Baby Lousier-Hicks Blood Drive
It's been quite the week around here, I've been housebound for most of it with two kids with Scarlet Fever. Go big or go home right? I got the priviledge of finding out that Scarlet Fever is essentially Strep Throat with a really fabulous rash all over the body. I actually thought it might be viral or even Fifths Disease as the boys looked as though they had been smacked, their little cheeks were so red. So here we are with yet another course of antibiotics, myself included so that there was no possibility of transferring it to Braeden. Because the kids were SO sick and Mike is working such long hours I didn't get to spend much time at all with B this week however (even without my presence) Mr. B has had an incredible week.
Braeden's week started out with me walking into his room Monday to find a baby with NO nasal prongs on his face...it took me a sec to figure out what was 'wrong' when I walked in. He was pretty proud of himself, that is for sure. It only lasted for about 1/2 an hour but it was a pretty huge 1/2 hour! He has been off of his 'high flow' oxygen since then and is tolerating it really well, in fact he is tolerating it so well that he is basically on a whiff of oxygen and that is all. He is still de-sating a bit (he did twice for no reason when I was there last night) but he does come right back up again.
The other thing that got worked on this past week was getting Braeden onto bolus feedings. Essentially they started by taking three hours worth of food and then running it through the pump over a period of 2 1/2 hours. He is now down to taking three hours worth of food over the period of only an hour. He was also a bit uncomfortable last night when I was there (he was smiley all day until I got there apparently) and we did have to vent his feeding tube but he is otherwise tolerating the 'full' tummy well.
His G-Tube is healing well and it's not nearly so painful for him now to have it cleaned and turned. He is obviously itchy under his steri strips though (the incision) because when he is on his tummy he wiggles and wiggles trying to scratch it. It is only a matter of time before the steri strips fall off now and from what I can already see his new scar looks good.
What does all this add up to?? THE ARE READY TO CONSIDER SENDING BRAEDEN HOME. Yes I said it, HOME, HOME, HOME! Dr. Volmero figures it should be able to happen within the next two weeks...HOLY CRAP, I know!! We have some hurdles to overcome still before it can happen but the thought of it is certainly there! How do I feel about this? TERRIFIED and EXHILARATED all at once. I have SO much to do to prep for him to be home, my house is a mess! The good thing is that he's not moving so at least the deep cleaning doesn't have to be the entire house yet!! We don't even have a crib set up yet, partly because it was too depressing for me to have a completed bedroom and no baby. I also wanted to paint his room but I really don't know what hours I am going to find to do that!! I knew that they were heading towards getting him home but at our last conversation with the Dr's it was still a month or two away. It is all because Mr.B is a SuperStar! It is, and has been, all up to him to whether or not he can make do with less oxygen or not and he gets a challenge and runs with it. I swear the way the kid grins at his nurses he knows that he is impressing everyone! This is the toughest, most determined kid I know!
My biggest concerns are (obviously) the fact that he won't be attached to a monitor anymore and if he falls asleep in a car seat can he maintain his airway? The Dr. said we'll have to figure all of this out over the next week or so. I guess they do a series of tests before sending him home and then repeat the tests two days after the child is released. What is another fear? The fact is we might get him home and it may not last. I'm trying to be as positive about it all as possible but Braeden is a little turkey as you all know and has pulled some pretty big surprises for us (physically) out of thin air (so it seems at times).
My biggest dream for Braeden once we get him home? It might be silly to some of you but I just want to be able to lay down beside him. I want to be able to curl myself around his little body and just love him. There have been many times over the past six and a half months that I've wanted to just crawl into his crib with him! The thought of being able to hold him anytime I want too is just so bizarre and foreign to me!
So I've done it, I've said it out loud and put it out there into the universe. I was intially terrified to say anything in case I jinxed it but I need to believe that it is possible and that is what is so concerning to me, I feel H-O-P-E. I've tried to be in as much of a positive frame of mind as I've could through this experience but have felt as though each time I dared to hope then something else happened. I decided that this time I will hope, I will toss it out to the universe and let it happen as it may. What will be, will be!
It's been quite the week around here, I've been housebound for most of it with two kids with Scarlet Fever. Go big or go home right? I got the priviledge of finding out that Scarlet Fever is essentially Strep Throat with a really fabulous rash all over the body. I actually thought it might be viral or even Fifths Disease as the boys looked as though they had been smacked, their little cheeks were so red. So here we are with yet another course of antibiotics, myself included so that there was no possibility of transferring it to Braeden. Because the kids were SO sick and Mike is working such long hours I didn't get to spend much time at all with B this week however (even without my presence) Mr. B has had an incredible week.
Braeden's week started out with me walking into his room Monday to find a baby with NO nasal prongs on his face...it took me a sec to figure out what was 'wrong' when I walked in. He was pretty proud of himself, that is for sure. It only lasted for about 1/2 an hour but it was a pretty huge 1/2 hour! He has been off of his 'high flow' oxygen since then and is tolerating it really well, in fact he is tolerating it so well that he is basically on a whiff of oxygen and that is all. He is still de-sating a bit (he did twice for no reason when I was there last night) but he does come right back up again.
The other thing that got worked on this past week was getting Braeden onto bolus feedings. Essentially they started by taking three hours worth of food and then running it through the pump over a period of 2 1/2 hours. He is now down to taking three hours worth of food over the period of only an hour. He was also a bit uncomfortable last night when I was there (he was smiley all day until I got there apparently) and we did have to vent his feeding tube but he is otherwise tolerating the 'full' tummy well.
His G-Tube is healing well and it's not nearly so painful for him now to have it cleaned and turned. He is obviously itchy under his steri strips though (the incision) because when he is on his tummy he wiggles and wiggles trying to scratch it. It is only a matter of time before the steri strips fall off now and from what I can already see his new scar looks good.
What does all this add up to?? THE ARE READY TO CONSIDER SENDING BRAEDEN HOME. Yes I said it, HOME, HOME, HOME! Dr. Volmero figures it should be able to happen within the next two weeks...HOLY CRAP, I know!! We have some hurdles to overcome still before it can happen but the thought of it is certainly there! How do I feel about this? TERRIFIED and EXHILARATED all at once. I have SO much to do to prep for him to be home, my house is a mess! The good thing is that he's not moving so at least the deep cleaning doesn't have to be the entire house yet!! We don't even have a crib set up yet, partly because it was too depressing for me to have a completed bedroom and no baby. I also wanted to paint his room but I really don't know what hours I am going to find to do that!! I knew that they were heading towards getting him home but at our last conversation with the Dr's it was still a month or two away. It is all because Mr.B is a SuperStar! It is, and has been, all up to him to whether or not he can make do with less oxygen or not and he gets a challenge and runs with it. I swear the way the kid grins at his nurses he knows that he is impressing everyone! This is the toughest, most determined kid I know!
My biggest concerns are (obviously) the fact that he won't be attached to a monitor anymore and if he falls asleep in a car seat can he maintain his airway? The Dr. said we'll have to figure all of this out over the next week or so. I guess they do a series of tests before sending him home and then repeat the tests two days after the child is released. What is another fear? The fact is we might get him home and it may not last. I'm trying to be as positive about it all as possible but Braeden is a little turkey as you all know and has pulled some pretty big surprises for us (physically) out of thin air (so it seems at times).
My biggest dream for Braeden once we get him home? It might be silly to some of you but I just want to be able to lay down beside him. I want to be able to curl myself around his little body and just love him. There have been many times over the past six and a half months that I've wanted to just crawl into his crib with him! The thought of being able to hold him anytime I want too is just so bizarre and foreign to me!
So I've done it, I've said it out loud and put it out there into the universe. I was intially terrified to say anything in case I jinxed it but I need to believe that it is possible and that is what is so concerning to me, I feel H-O-P-E. I've tried to be in as much of a positive frame of mind as I've could through this experience but have felt as though each time I dared to hope then something else happened. I decided that this time I will hope, I will toss it out to the universe and let it happen as it may. What will be, will be!
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